Thursday, April 13, 2017

EEG Results ~ Feeling disheartened...

Thursday night Reagan was very excited to prepare for her sleep deprived EEG on Friday.  She remembered from the previous year being able to stay up late and watch movies.  So Johnny took the late shift and kept her up until 1am and I set my alarm and got her up at 5am.  We took Cole with us this year for the first time and it was his job to keep her awake for the 45 minute drive to the hospital. Although she almost fell asleep twice, Cole had a little too much fun hitting her and screaming to keep her awake.  He had a lot of questions about what an EEG is and how it works.  He was also very concerned about his sister and watched over her carefully.

Reagan did very well during the test.  It doesn't go without appreciation that when she was younger this wasn't as easy. The tech was very nice and did a great job explaining what she should expect each step of the way.  After about 15 minutes of getting setup and responding to some questions and breathing the tech turned out the lights and started a series of strobe lights.  They started slow and further between and increased with speed and frequency.  She was measuring brain activity both during wake and once Reagan fell asleep.  We were so proud of Cole being able to sit quietly for 40 minutes during the test.  This was important not only because she had a video monitor, but also because she needed to stay asleep. A year ago I'm not sure he would have been able to sit still that long.

We had our follow up today with the neurologist, Dr. Lavenstein.  We've been thinking about this appointment since our last EEG in April of 2016 and hanging our hat on something Dr. Pearl told us when Reagan was only 1 year old.  He said the around the age of 8 the brain could settle down as the majority of the mapping has developed.  Amazing how we've always kept age 8 in the back of our mind as a first goal (she turns 8 next month).  As you may remember, Dr. Lavenstein also suggested we repeat the EEG this year to determine if Reagan may be able to come off her medication.  Although he was very happy to hear she is still responding well to the Trileptol, he said that the EEG shows no improvement since last year and that she continues to have frequent focal discharges in the right frontal lobe in the area where her surgery was.  This indicates that without medication, her probability of having seizures from activity responding to the area of scar tissue is probably 50-60%.  We were hopeful going into this appointment that being seizure free for 5 years would be a huge factor in trying to go off her medication.  Unfortunately, Dr. Lavenstein said he just doesn't think it's a good idea.  I'm sure he could see the disappointment in our faces as we digested this information.  His compassion was apparent as he reminded us that we should be so thankful that the medication has allowed her to live seizure free for 5 years.  I mentioned our concern about learning challenges from the affects of the medication and he said research supports that seizure medications can do that.  But he also said that having seizures has so many negative affects on the brain's ability to learn and retain information that the risk would be counterproductive.  Reagan asked if she could start taking her medication as a pill.  Although she hasn't taken pills before, she said she is ready to try.  And selfishly it would be MUCH easier to keep pills in our bag if we are away from home not to mention they don't have to be climate controlled like her liquid medication.  AND we won't have to keep hundreds of syringes in the bottom drawer in the kitchen!

And so we left feeling as though the hope was lost.  We were told to come back in 6 months for another checkup and that maybe one day we would see improvement in her brain activity that may allow her to come off medication. But not today.  I have thought a lot about why we want this so badly.  I have come to the conclusion that especially now without therapy, and her doing so well in her activities, that the medication is one of the only things that prevents us from feeling like we could put this in the past.  Twice a day we are reminded that one day she may have a seizure again.  We are so happy with how well she is doing, but I guess there are days I just want to stress about normal mom stuff.  Like picking summer camps and Easter outfits.  But alas, this is not our destiny and so we carry on.  I tuck my children in bed each night, like all moms, kissing them good night, telling them how much I love them, how proud I am of them, and hoping they know how amazing I think they are for taking life head on and never giving up on things that are so very hard.

Thursday, April 6, 2017

Ophthalmologist, Contacts, Lacrosse and Therapy is a WRAP?!

Well I have a few updates I should share.  First is that we had our bi-annual appointment with the Ophthalmologist, Dr. Jeffrey.  She was pleased with how Cole is doing and chose not to dilate his eyes since we had just done that in the Fall when we went to Ohio.  He didn't show any improvement in his vision exam, but she did say that the brain is still developing and we could see some minor improvements still in the next year or two.  She also isn't convinced that the contacts are going to help dampen the nystagmus, but said that it doesn't hurt to try if Cole allows us to put them in.  Unlike the optho in OH and our low vision specialist, she was willing to hold him down to get them in...and we did.  Unfortunately we only got one contact in and he was too upset to put in the other one.  But the good news is that he knew what it was like and knows they don't hurt.  This was huge progress!  She did say, however, that it is fine if we put the contacts in at home.  The other dr.'s told us it should be done in the office so they can check them.  No other big news from that appointment so we will go back in six months.

So I talked to Cole when we got home and let him pick what day he wanted to try the contacts again. He picked a day, and that morning I laid him on the bed and popped them right in his eyes.  Not to say it was EASY per se (I've never done it before) but he didn't have any problem and not a single tear!  He has worn them twice since but still isn't a big fan of them. Given there are mixed opinions on whether they will help, we're taking it slow while he gets used to the idea.  He did share Tuesday night that he didn't want to wear them because he didn't want the kids at school to know that he has to have a vision teacher.  We talked about how the kids know he has trouble seeing and that it's ok.  I went to bed worried about him but he woke up Wednesday and asked to wear them, so in they went! I would love to say that our conversation fixed the concerns, but he didn't want to wear them today so we still have some work to do.  He was pretty excited to be able to wear Spiderman sunglasses though!

In other news, Reagan decided she wanted to try lacrosse for a second season and join the Algonkian Tribe Girls 1/2 team. They have so many girls they are splitting them into two teams that will play back to back but all practices will be together.  She is SUPER excited that her dad is one of the assistant coaches!  It is so fun seeing her play and so helpful having dad help learn the skills.  Given there are so many girls new to lacrosse this year it's also fun seeing Reagan helping the others.  Unfortunately their first game was rained out Saturday but she will be playing a double header Saturday to help out the other team since so many girls are away on Spring Break.

And more big news about Reagan!  Her therapist from INOVA Rehab, Julie, is moving back to CA.  The care plan Julie wrote was coming up for re-evaluation and Reagan met all three of her short term goals and 2 of her 4 long term goals!  She has learned to tie shoes with two hands, she is able to successfully use a zipper, she can maintain yoga/plank poses for 15 seconds and propel a scooter board using bilateral movements for up to 200 feet.  And the most exciting one for Reagan is that she increased her grip strength from #5 to #10 using a dynamometer! This is huge - it shows how much stronger her hand grip has gotten.  She has gone from only being able to hang from monkey bars with two hands for about 2-3 seconds to be able to hold it over 12 seconds!!  The goal she has not mastered is putting her hair in a pony tail and using fasteners to dress her herself (buttons, snaps, zippers).  Both of these goals were focused on pronation and fine motor coordination which are still really hard for her.  Based on her progress and the activities she does (piano, TKD, lacrosse, swim team), Julie recommended we take some time off from occupational therapy.  Wow, never thought I would hear those words!  In all honesty, though, it has been a little hard to accept.  You'd think I would be happy, right?  Therapy 1-2 times per week for almost 8 years has been a huge commitment for us.  We decided we will come off the regular schedule, but she developed a new plan of care and will take cancellation appoints as they come up throughout the year.  I'm hoping that gives her some freedom to just be a kid but also some touch points where a professional can gauge if she is falling behind.

This decision comes with it a lot of mixed emotions thought.  I'm excited Julie thinks Reagan can maintain her progress without professional supervision, but I can't stop myself from feeling like we're giving up on her making more progress.  I can't stop myself from feeling like this may be all the improvement she may have in her hand.  She broke down a few weeks ago and said, "mom, what if my hand is like this forever."  It absolutely tore at my heart to realize she think she may regain full use and functionality.  And yet, who knows right?  With enough hard work and focus maybe it is stopping the right choice?  I can't imagine not being able to put my hair in a pony tail, fasten a bra, or have to wear clothes without buttons.  I pray that one day medical advances will help us retrain the brain to work these muscles.  Until then, I hug her, I love her, I remind her how amazing she is...despite the fact that she can't juggle three scarves like the other kids in her PE class.  It's ok, it doesn't define her.  But when I tell her it's ok if she can't juggle scarves she says, "it's not ok with me."  It is exactly that spirit that has gotten her to where she is today.  I hope one day she knows how amazing I truly think she is.  Every step of the way she has worked hard and never given up.

And with that, we go into Spring Break week with our EEG prep tonight for tomorrow's test.  Reagan is SO excited about her EEG because it means she gets to stay up ALL NIGHT.  Luckily mom and dad tag team - he has has the late shift and I have the early shift.  So much easier going into the testing with a little girl who is excited.  If only I could be excited about staying up late and not being worried about what the results will mean.... so many days I wish I could be a kid again!

Monday, March 20, 2017

Making Braille with Legos - the Secret Ninja Decoder Language!

It has been a busy week learning many new things!  Last week Cole had his first two official Braille sessions with Ms. Valerie.  I joined the second one and was very impressed with how much he remembered.   There are so many parts of this journey that I just have never thought about.  For example, reading and writing Braille are two completely different tasks to learn and are very different.

Cole started using a Perkins Braille Writer this week.  Much like a type writer, he needs to learn all the different parts and keys so he can operate the device.  Luckily it has NO battery so it's very easy to work anywhere.  Although it is definitely prohibitively heavy so not a "road trip" type of activity - they are 10 pounds!  That's like 10 bags of sugar!  But he's learning and that's what matters.  There is one tricky part (I think) and that's converting what he's learning to READ into WRITING.  You can see in this picture he has something called a "swing cell" which mimics the "full cell" that you use to make Braille letters.  So he can take the pegs, create the letter, then "swing" it so it sits in front of the Braille in front of the correct keys.  In this example he is writing the word "all" and the swing cell has the letter "L".  Since it is three dots down the left side you can see he will press keys 1, 2 and 3 simultaneously.  As if this can't get MORE confusing, there are letters that also represent entire WORDS.  As you can see in this Braille print, the letter "L" also represents the word "like".  So in addition to learning the alphabet, translating it to type it, he will also have to learn the context being used to determine if something is a letter or a word.  You can also see on this printed sheet that the letter "C" also represents the word "can".  Cole's initial lessons are to learn the parts of the Braille writer and understand how to use the swing cell to type words.  This includes learning how to lock and unlock the Braille writer to insert and remove the paper and using the carriage return to move to the next line.

Ok, so now let's talk about reading Braille.  As I mentioned, we've been using the cupcake pan with the lacrosse balls and it has been working GREAT.  The only limitation is that 1) the kids tend to start throwing the balls in the kitchen and 2) he can only do one letter at a time.  So we created a little harder task so that he can start spelling words to make it more fun.  While Reagan was at her Black Belt practice Saturday afternoon we took a drive to Tysons's Corner Mall to the Lego store.  We picked up a tub of 2x3 tiles and studs.  If anyone is going to try this, I will warn you that the store ONLY carried this one orange brick in 2x3 and it's the thinner one.  All the other bricks were 2x2 or 2x8 (which wouldn't work for obvious reasons).  Of course with low vision, the contrast is critical so we chose the black studs and stacked the thin 2x3 bricks three high so they would be easier to work with.

I created the alphabet several times so we have a big tub of letters to create words and eventually write sentences.  I haven't learned punctuation yet, but I'm sure that will come next.  Although tempted to write the letter of each brick on the front, I was worried he would try to look at it.  But I did put a black dot on the front of each so it is easier to know the top from the bottom.  I have decided that each day I will write Cole a note while he's at school that he gets to decipher when he gets home.  The first line says "I love you," the second line says "Cole" and the third line says "Bischoff."  I'm still trying to figure out if putting the bricks next to each other makes it easier or harder to decipher the letters so I'm trying both right now.  The last two lines are the entire alphabet and then I added a few letters that are inverse to each other so he can learn them comparatively.  That's the E/I, R/W and F/D/J/H.  The mnemonics for that is Friendly Dogs Jump High but I'm not sure if he's going to get that yet.  Worth a shot!  The mnemonic for R/W is Right and Wrong.

He is still having a lot of fun with the Ninja Decoder idea and I have more props to share in my next post. I am trying to find a balance of fun and learning so this doesn't get old or become a chore. Finding a time to present it when he's not tired is challenging, but we're working at it. Right now he's having fun with the Ninja idea, but I worry over time he's going to see it like something he has to do.  Unfortunately everyone has homework, and this is just a little more than most kids.

He did voice last week that he was frustrated this was something only he has to learn.  His TVI mentioned there are lots of other kids learning it.  He knows one girl at his school and she happened to walk by. He was SO excited to find out she was a secret ninja too!  His TVI is also going to coordinate to have a middle schooler who is learning Braille come visit with him.  Apparently she wants to become a teacher and thought it would be fun to see how Ms. Valerie is teaching him.

And the latest quote from Cole, "Hey mom, don't you think it would have been better if we were all born in Heaven so we could see what it was like before we come to Earth?  Then we would know we really want to go there."

And with that, let's celebrate that Spring is here, the snow is melted and Easter is right around the corner!

Thursday, March 9, 2017

Functional Vision Assessment, learning Braille and First Penance !

Well Spring is in the air and the flowers are blooming.  It has been a slow start to the year with doctor's appointments and I'm NOT complaining!  We did get the results of the Functional Vision Assessment for Cole, however.  This was a battery of tests performed by his Teacher of the Visually Impaired (TVI) and a representative from the Department of the Blind and Visually Impaired (DBVI).  The outcome of that assessment is that the optimal font size for Cole to be able to access his education is 28 point font.

Currently, most print is larger because he is in Kindergarten so he isn't experiencing a great deal of eye strain.  The concern increases, however, as books have more words and less pictures, have smaller font, and the classwork increases around third and fourth grade. There are services that provide "large print books" but it really is a misnomer.  Actual printed books can only be printed up to 18pt font and they are apparently so big they are cumbersome and difficult to hold to read.  We will be able to get his books electronically so that with the use of monitors the font can be increased for reading on a computer, but the concern is that with increased size comes more right-left scrolling which could decreased comprehension.  The concern is that his eyes will strain to read and he will start to fall behind in classes.  Currently he has content magnified on his already large monitor to 150-300% depending on the size of the text to begin with.

So we had an IEP amendment meeting this week to add Braille to his curriculum, not as his only learning method, but as a dual media. So he will now be expected to learn like sighted kids and like kids without sight.  If he were to learn only Braille, he would not be taught to write.  So we decided as a team that he needs to learn both.  Although nervous about this new path on our journey, I know it can't hurt to have more options if the day comes that he is struggling to keep up with his classwork.

Given it takes most people three to four years to learn Braille, I also requested he be provided summer school (Extended School Year or ESY) to get a foundation before classes start in the Fall.  He was approved, but unfortunately they can't provide more hours than they provide during the school year.  So he will have 1.5 hours per week during the four week summer school.

We have also enrolled him in the Braille Enrichment for Literacy and Learning (BELL) Academy through the National Federation of the Blind.  This is a two week summer camp for children with visual impairments.  They will do crafts, games and other projects to learn Braille and learn how to use touch to navigate their environment.  Although I know he will be in good hands, it will be very exhausting for him.  It starts at the beginning of August in Arlington for 6 hours every day.

Although this news is discouraging to me, we are so blessed the option is available.  I expect 20 years ago there may not have been this option at his school and he may have had to get bussed to another location.  I know it's just another way to give Cole everything he needs to succeed, but it does break my heart.  I've started talking to him about it and preparing him. I told him it's like a secret Ninja decoder language that not everybody gets to learn.  Only extra special, lucky kids.  It's all about the spin and perspective right?  In order to get started, we borrowed some of Reagan's lacrosse balls and a cupcake pan (and a printed cheat sheet) and started learning letters.  Over the weekend Cole learned to spell his name and started to master the alphabet.  We were at church last week for Ash Wednesday and he looked up and asked, "Mom, in Heaven will I be able to see like everyone else and not have to wear my glasses."  I said, "yes honey."  And he said, "Mommy, don't be mad, but I really can't wait to go to Heaven."  As my eyes welled with tears I gave him a big hug and thanked God He chose this little boy to be in my life.  His sweet mind and caring heart will carry him far.  He also asked me recently, "Mom, if we don't take our body to Heaven then where do angels put their wings?"  You have to admit, he asks some good questions!

Reagan also had a big week receiving the Sacrament of Reconciliation and getting her First Penance.  She was very nervous to tell the priest about all her sins.  But she did a really nice job (or at least that's what she said).  So next up is First Communion for her in May!  She is very excited to start receiving communion!

Next up...Reagan's EEG in April and hopefully a fun Spring Break trip!